Authors

S. Ingen-Housz-Oro, V. Schmidt, M. M. Ameri, R. Abe, A. Brassard, A. Mostaghimi, A. S. Paller, A. Romano, B. Didona, B. H. Kaffenberger, B. Ben Said, B. Y. H. Thong, B. Ramsay, E. Brezinova, B. Milpied, C. G. Mortz, C. Y. Chu, C. Sotozono, J. Gueudry, D. G. Fortune, S. M. Dridi, D. Tartar, G. Do-Pham, E. Gabison, E. J. Phillips, F. Lewis, C. Salavastru, B. Horvath, J. Dart, J. Setterfield, J. Newman, J. T. Schulz, A. Delcampe, K. Brockow, L. Seminario-Vidal, L. Jörg, M. P. Watson, M. Gonçalo, M. Lucas, M. Torres, M. H. Noe, N. Hama, N. H. Shear, P. O’Reilly, P. Wolkenstein, P. Romanelli, R. P. Dodiuk-Gad, R. G. Micheletti, G. S. Tiplica, R. Sheridan, S. Rauz, S. Ahmad, S. L. Chua, T. H. Flynn, W. Pichler, S. T. Le, E. Maverakis, S. Walsh, L. E. French & M. C. Brüggen

Abstract

Background: Long-term sequelae are frequent and often disabling after epidermal necrolysis (Stevens-Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN)). However, consensus on the modalities of management of these sequelae is lacking.

Objectives: We conducted an international multicentric DELPHI exercise to establish a multidisciplinary expert consensus to standardize recommendations regarding management of SJS/TEN sequelae.

Methods: Participants were sent a survey via the online tool “Survey Monkey” consisting of 54 statements organized into 8 topics: general recommendations, professionals involved, skin, oral mucosa and teeth, eyes, genital area, mental health, and allergy workup. Participants evaluated the level of appropriateness of each statement on a scale of 1 (extremely inappropriate) to 9 (extremely appropriate). Results were analyzed according to the RAND/UCLA Appropriateness Method.

Results: Fifty-two healthcare professionals participated. After the first round, a consensus was obtained for 100% of 54 initially proposed statements (disagreement index < 1). Among them, 50 statements were agreed upon as ‘appropriate’; four statements were considered ‘uncertain’, and ultimately finally discarded.

Conclusions: Our DELPHI-based expert consensus should help guide physicians in conducting a prolonged multidisciplinary follow-up of sequelae in SJS-TEN.